Hi all. Ive not been on here for a while. I have a bit of central thyroid going on.somemof you might remember ....... Ig1f was raised 2 years ago .Still under investigation.. had pituitary mri...had..... gh suppression test aswell and acromegaly and all the other hormones checked..
Only thing was out was ig1f at the time
So they are now re checking again as I its been 2 years
So got more tests to come. As it got stopped because of covid ..
Over a period of time i had generated a rash which would cone and go. My god it was the ichiest rash you can imagine. It got so bad i stopped taking levo... The rash stopped and i even stayed awake longer and felt generally better.
So me and the endo have decided it must be an allergic reaction. i haven't been on levo yet but she wants me to start on it again . Only 50mcg a day..
She said the bloods where low.. baring in mind i stopped levo a month ago.. i cant believe im managing to work as well..
Question i was on activis for a few years and seemed fine..but now accord ..not sure if that's relevant...
What would be the purest one to tell the gp i want to try next. ???
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Spotydave
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Have you tried taking histamine tablet before taking levothyroxine
50mcg levothyroxine is only a starter dose
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Dose levothyroxine is increased slowly upwards in 25mcg steps until Ft3 is approx 50-60% through range…..Ft4 often higher in range
Important to regularly retest vitamin D, folate, ferritin and B12 too
Have you had ultrasound scan of thyroid
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Hi slow dragon .. long time no hear..Yes i know most of this.. but always great to be reminded
I must of had every test going lol .. everything is ok except raised ig1f... Ive had another ig1f test done two weeks ago ..waiting on the results
I have another mri with contrast next month. If ig1f is raised agin om having another GH supression test. Which was normal last time. Including the mri.. but the endo isnt giving up. She's also thinking of sending me to kings as i don't think she fully knows what's going on but she also said she knows someone who will know.
The rash got worse and worse and it also set of a bad case of eczema... I stooped taking 100mcg and the rash and
The eczema stopped aswell..
No rash now.. no itching nothing. I tried antihistamines.. didnt make no difference..
Ive had loads of bloods .but not vitamins bloods from the endo.. plus ofcourse no t3 test.. as expected.
Colesterol .. its in my family.
So i want to try another make.. but i dont want all the fillers
if a patient is persistently symptomatic after switching levothyroxine products, whether they are biochemically euthyroid or have evidence of abnormal thyroid function, consider consistently prescribing a specific levothyroxine product known to be well tolerated by the patient
if symptoms or poor control of thyroid function persist despite adhering to a specific product, consider prescribing levothyroxine in an oral solution formulation
They don’t like prescribing as it’s expensive
Still likely to need addition of T3 prescribed alongside eventually
But you need to get up to full dose on liquid levothyroxine first
Why don’t you try Wockhardt brand. They have far less nasty fillers. They only come in 25mcg but are very small and you can take multiples to make up your dose. They are the only brand I can tolerate. Worth a try before you go down the route of getting liquid Levo which isn’t strictly without excipients
Hi gingernut sorry for the. Late reply... Work work work.Yes i think i will give that one a go. I've have not taken ant levo for 6weeks and still feel fine which i don't understand... But i think if the next set of bloods still show its low i will try wockhardt . Ive heard many people get on with that more
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
That wont be easy...I know at the moment the endo is more working in the pituitary problem. And we agreed i will work with GP to sort thyroxine.. im interested that i have been on no t4 for a month and have actually felt better overall.. why would this be ?
Im going to get some private bloods done again to have w better look
That's interesting...trouble is. I have a pituitary issue aswell so i think my reading are not true... This is why i told the endo i should have a t3 test. She basically said no... She's being very thorough with the pituitary testing but not with the thyroid problem
I never new hashi can make a central thyroid problem.. I think i will get a private set of bloods done.. see where i am right now. And hopefully go armed to the gp . I weigh 98 kilogrammes
On the subject of your raised IGF1, bit of a shot in the dark, here. But, have you been taking any supplements high in vit A? Or do you eat a lot of foods rich in vit A: liver, liver paté, liver sausage, mackerel, salmon...
I seem to remember form way back, when my IGF1 was low, the doctor said something about low vit A. Might be worth getting it tested?
Hi greygoose. Good to hear from you.... When i 1st found raised 1g1f .. i dont think i was . But would this be the same for raised not low?? I use to have macrel but not lots..... Im waiting on the latest igf test.. this will be the 3rd ....last two was 2years ago ....
Well, logically, if IGF1 is low due to low vit A, then it could by high due to high levels of vit A, don't you think? I don't know. Just a suggestion as your endo seems stumped.
Thats very true.. i see your angle.. definitely might be worth finding out.. trouble is you cant say this to an endo she looks at you like you a loon...I do know on my next set of bloods the endo is testing antibodies again..aswell as loads of hormones again
Because i mentioned i had hasi .. and she went back on the records and see it..
Well, if you know you have Hashi's, not much point in retesting antibodies. Hashi's doesn't go away. And, it has nothing to do with the pituitary. She seems to be clutching at straws!
I think shes very thorough on the pituitary.. she has said because its been two years shes re testing everything again... Including mri with contrast... And also said if necessary she will send my case to kings .. because the signs shes use to isn't coming up... Im having complete new bloods on the same day as mri
This is well beyond my knowledge - just to say that years ago (before diagnosed with hypothyroidism) I was under extreme stress with terrible rashes on the backs of my hands especially in winter. A friend suggested seeing an alternative therapist who tested me for allergies and found that I was allergic to mackerel and tuna. Just a thought - maybe one of the pieces to the puzzle. Best wishes
Sorry for the late reply....to much work. LolThat's intresting...sinse ive stop taking thyroxine the rash has. Now gone . So i definitely think theres an issue with the tablets..
Perhaps its the brand of tablet that you're taking. There is a big discussion about different brands at the moment and that fact that TEVA appears to affect some people more than others.
Hi there . Sorry so late ..ive had a break from t4 with no issues but now. Ive changed to wokenhrt (wrong spelling) started low dose today.. So watch this space.
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I don't know. Just a suggestion as your endo seems stumped. 
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